Clinical Trial: Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With NF

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Relationship Between Psychosocial Factors, Health Literacy, Quality of Life and Satisfaction With Medical Visits in Adults With Neurofibromatosis 1, Neurofibromatosis 2, and Schw

Brief Summary: This is a prospective study through the NF clinic at Massachusetts General Hospital that will examine the relationship between psychosocial factors, health literacy, and satisfaction with the medical visit in adults with NF1, NF2, and Schwannomatosis. A total of 89 participants will be enrolled in the study.

Detailed Summary:
Sponsor: Massachusetts General Hospital

Current Primary Outcome:

• Patient Reported Outcomes Measurement Information System (PROMIS) [ Time Frame: Baseline (pre-medical visit) ]
  A battery of measures assessing: depression, anxiety, anger, fatigue, pain behavior and interference, physical function, satisfaction with discretionary social activities, satisfaction with social roles, and health literacy.
• Functional, Communicative and Critical Health Literacy (FFFHL) scale [ Time Frame: Baseline (pre-medical visit) ]
  Measures one's health literacy, the capacity of individuals to access, understand, and use health information to make informed and appropriate health-related decisions.
• Medical Interview Satisfaction Scale (MISS) [ Time Frame: Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. ]
  Measures patient satisfaction with individual doctor-patient consultations.
• Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey [ Time Frame: Participants will be followed for the duration of their medical visit, an expected average of no more than 2 hours. ]
  Asks patients to report on and evaluate their experiences with health care. This survey covers topics that are important to consumers and focus on aspects of quality that consumers are best qualified to assess, such as the communication skills of providers and ease of access to health care services.

Original Primary Outcome: Same as current

Current Secondary Outcome:

Original Secondary Outcome:

Information By: Massachusetts General Hospital

Dates:
Date Received: April 29, 2015
Date Started: February 2015
Date Completion:
Last Updated: April 2, 2017
Last Verified: April 2017